Support & Hope
There’s a fine line of wanting to be supportive and saying the wrong thing.
I’ve been a caregiver now for 12 years so it can be easy to forget that there was a time when I had no idea of the challenges that a mother of a child with autism faces on a daily basis.
I remember those times that I probably said the wrong thing to moms of children with autism because I’m a talker and tried to make connections with new people by mentioning anyone I knew with a child with autism.
For most people, offering words of comfort and reassurance comes naturally, and they usually mean well, even when these words of comfort and reassurance come in the way of a story about a family with a child with autism.
They truly don’t understand that autism is a spectrum and that no two kids with autism are the same. While this use to bother me, I’ve recently realized that it’s natural for people to assume that if they know one child with autism then they generally understand all kids with autism.
People know what they know until they know different.
For example, in my circle of family and friends, my daughter Summer is one of their reference points of a child with autism. Therefore, her behaviours, her abilities and all of her progress are with what these people are familiar.
In some instances, these friends and families share a milestone that Summer has reached in order to offer hope to another family with a child with autism.
The fact that Summer has started to speak and can now use 4-5 word sentences to express her needs is so wonderful and has allowed us to better understand and meet her needs. We celebrate this win and we share this win within our circle.
At the beginning of my caregiver journey, I didn’t want to hear about the wins of other kids with autism when I felt so very defeated that a speech therapist told me that it wasn’t even worth putting Summer in speech therapy at age 4 because she couldn’t even pronounce the sounds of consonants and vowels.
But now I understand the importance of hope. Parents of children with autism need stories of inspiration and hope so that they never give up on their kids.
Summer is 12 and I know parents who have children with autism – who are the same age – and they are still waiting for their child to speak and communicate.
There is no rhyme or reason.
What I have learned is that people do care. People want to offer support. And even when we – as parents of children with autism – are hurting, mourning and feeling uncertain about the future…we get to help create awareness and acceptance by creating moments for dialogue and communications.
It’s not an Us vs Them scenario….even though that’s how I sometimes feel. For example, “How the hell would they ever know how very challenging it is?” Yet, I remind myself that it’s not their fault that they don’t know.
It’s taken me a long time to get to come to this understanding, and it feel so very reassuring now that I’m here.